Time to Talk

The impact of pulmonary arterial hypertension (PAH) on the lives of patients and carers: results from an international survey

PHA Europe is pleased to share with you the results of a large scale PAH Patient and Carer Survey, carried out at the end of 2011 across five European countries.

The survey was undertaken to provide new insights into the wider impact of PAH on patients and carers, with a focus on the practical, social and emotional impact on the patient and carer and their information needs.

It is hoped that the findings will help the PAH community to better understand the experience of living with the disease, inform further research, and provide evidence of the need for a more comprehensive standard of care for the future.

Please click on the image above to access the full PAH patient and carer survey findings

I used to sleep 5-6 hours a night and feel well. Now I sleep 8 and I’m tired all the time. Carer

I would describe PAH as being like going in a car which won’t go over 10 kph. Patient

The results from the survey reveal the major limitations caused by PAH that can affect the lives of patients and their carers. Key calls to action from the survey can be found below.

Need to recognize carers as an individual alongside the patients and provide a compelling argument for both to receive a more comprehensive standard of care

Patient organizations have an important role to play in the provision of a range of information to patients and carers and that earlier referral by healthcare professionals to patient groups would be beneficial

The best PAH management requires a multidisciplinary approach to include support from physicians, nurses, social workers, psychologists and patient organizations to allow better assessment and improvement of patients’ emotional and social wellbeing, as well as their clinical symptoms

PHA Europe has developed simple and easy to use materials for patients and carers to support you in confidently engaging with your healthcare professional. We have also developed resources to support our member groups in sharing the survey findings.

Please click on the relevant icon below to find out more about how these materials can support you to achieve the best standard of care possible.

Are you a patient or carer?
To find out how you can utilize the findings from the survey to ensure you are discussing and receive the most appropriate care for you, visit our ‘Time to Talk’ resources section, where you will find materials and resources to support your individual care planning and conversations with your healthcare professional

Are you a PHA Europe member organization?
To support you in communicating the results of the survey to your members locally, please visit our ‘Time to Talk’ resources section, where you will find tools and guides including, ‘how to hold a media launch’ and ‘sharing best practice case studies’

The International PAH Patient and Carer survey and Time to Talk campaign have been supported by Actelion Pharmaceuticals Ltd, Switzerland.